July 28, 2014

Nineteen Words

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , at 11:04 am by autismmommytherapist

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“Come here Justin” I say quietly, and as always my towel-clad boy obeys, happily sliding into my lap for his post-bath cuddle.  We have a routine for our bed-time ritual that we adhere to religiously, and I can tell my son enjoys the familiarity, smiling at each step in our path to bed. Tonight however I’ve decided to deviate just slightly from our norm, as I want to try something different within our usual arsenal of me saying the coveted nineteen words he’s so recently acquired, then waiting eagerly for his response.

Tonight I simply hold up the word list, and wait.

He looks at my mouth curiously, waiting for those hard-won words to spill forth, but for once I just point at the list.  Justin regards my outstretched finger for a good thirty seconds, then I swear I see a slight grin slide across his face as I listen in amazement.

 

“Mama”

“Dada”

“Hop”

“Pop”

“Mop”

“Top”

“Zach”

 

Ten years ago we were told if he didn’t speak by the age of seven he probably never would.

We heard his first coherent utterances at ten.

 

He takes a deep breath and shifts slightly on my lap, then forges on.

 

“Help”

“Ball”

“Apple”

“Bubble”

“Eat”

“Door”

 

Ten years ago we were told there was a good chance he’d never read.

We watched him master his first sight words at three.

 

Justin seems to gear himself up for his finale, not the slightest bit daunted by the fact he’s facing new words he’s just learned this week.

 

“Bed” (a favorite)

“Boat”

“Bus”

“Boot”

“Bat”

“Bee”

I can feel his focus shift as his eyes slide away from the paper I’m clutching.  As I balance my boy I sense the display of his newfound skill is over, and I see him eyeing his toothbrush as he scoots off my lap.  It’s a momentous moment this, one I want to savor as I think of all the “can’ts” and “nevers” I was told or read about a decade ago, many that sent me hurtling toward despair.  Justin may never have conversational language, may never even use a technological device to solicit more than his basic wants and needs.

But no matter what, he has this.  He can read to his mama out loud.

And I have a reminder to always push him to be his best self.

Nineteen words.

 

 

 

 

 

September 23, 2013

Chaos and Clarity

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 11:02 am by autismmommytherapist

Summer 2013 Part 2 083“Are we there yet?” my smallest son whines as my family trudges through the extensive Great Adventure parking lot, and although his tone is annoying I have to smile, because I can clearly remember peppering my mom with that same query in this very parking lot about a hundred years ago. “Soon honey, soon” I say, and drop Justin’s hand momentarily so that Jeff and I can swing Zach and thereby distract him.

We give him a few whirls, then our tired middle-aged arms give out, and we tell him he has to walk the rest of the way. I reach out for Justin’s hand once more, then realize he is gripping my arm as he moves in front of me, stopping me dead in my tracks. He gifts me his intense gaze, then he tries to talk.

My ten-year-old son attempts to speak an entire sentence.

My heart pounds to the staccato of his syllables, consonants like “b” and “m” punctuating the air around us. I have no idea what he’s saying, me, who can divine what DVD he wants when he hands me a book filled with hundreds, me who can discern what snack he desires at a venue prior to his pointing for it, me whose gut tells her which bedtime story he’ll choose every night before slumber.

He grips my arm tightly, searches my eyes as his lips form the sounds, pronouncing them with an almost feral intensity. I think I hear an “I” and an “l” in there somewhere, and given that I definitively heard an “m” I go out on a limb and respond “Justin, I love you too.” He responds with the faintest of grins, grabs my hand tightly, and resumes his loping gait toward our waiting car.

My husband and I lock eyes. We are momentarily stunned. I struggle to hold back tears.

This isn’t the first time we’ve had spontaneous speech. There has been an elusive “mama” or “more” thrown our way on occasion. But the lion’s share of Justin’s language has been in response to a question put to him regarding a concrete concept, such as a snack desired, or the choice of a destination.

We’ve also had some success with a repertoire of repeated words out of context, a litany of language we require he attempt or give us some approximation thereof, mostly so he doesn’t lose what he’s worked so hard to acquire. The latter is in no way “typical” conversation, but it is the primary way in which we elicit words from him. What just happened in the parking lot is different. It’s spontaneous. It’s purposeful.

It simultaneously renders me elated, and breaks my heart.

It’s the earnestness that gets me, that elusive thread so pervasive in my son which propels me to work so hard for him, to “get” what he wants. In that moment he wanted to convey something sacred to him, and all I can do is hope his momma got it right. I resume our trajectory toward our SUV and glance at my spouse, who says “he really tried that time”, and I nod in response.

The truth is I mostly relinquished my longing for words a while back, replaced it with the desire for any form of communication which would work for my son. We’ve had some success with the iPad and a program called Proloquo2go, but he predominantly employs it at school with his academics, is more reluctant to make the effort at home or in the community. Despite his hit-or-miss usage in the house I’m so grateful he has any means with which to convey his needs. I continue to hope he’ll one day type his wants, and dare I hope, his thoughts, as he matures and progresses in his education.

And yet I know a part of me will never completely give up on my desire to hear his conventional speech. While I’ve locked that dream away, put it on a shelf far out of reach, I remind myself it’s okay to dust it off occasionally and revisit.

Because with autism, you just never know.

My eldest son sights our car and increases his pace, the “e” sound surrounding us in his joy, as he knows both rest and juice await him. I realize that the entire episode lasted less than thirty seconds, that my youngest child is completely oblivious to what transpired. I know that it might happen again. I acknowledge to my fragile heart that it might not.

I remind myself that this child does not require spoken speech to tell me he loves me.

Jeff and I load children and paraphernalia in our waiting chariot, and I have to smile at the yin and yang of it all. This is how things go in our family. There is progress made, and progress lost. There is elation at skills learned, and sadness at such profound struggles. There is chaos, and there is clarity. There is autism.

And at this moment there are two urgent requests for juice boxes, and my husband complies as I put the car in drive and head to our next destination, the journey always challenging, but compelling in its beauty and its breadth.

March 26, 2010

Zach’s New Friend

Posted in Life's Little Moments tagged , at 10:13 am by autismmommytherapist

My child has an imaginary friend. I am so ecstatic I will personally build him his own bedroom if required. Since I needed my husband’s help to assemble Zachary’s six-piece Sesame Street toy set at Christmas, this should indicate my commitment and strong level of enthusiasm regarding this latest development in my second son’s world.

My youngest child is three, and ordinarily, his life should be peppered with such invisible companions. There should be an extra place setting for his see-through buddy at dinner, perhaps an additional teacup provided for the English custom Zach must have learned about in school. On any given day I should be shamelessly cajoling his imaginary buddy to bribe my son to ingest a vegetable or two, or convincing Zachary that his compatriot does indeed, like him, need a nap. Zach’s world however is not an ordinary one, and for a time I feared his mild autism would keep him apart from the fanciful, the fun that evolves from contrived characters and events. Apparently I need not have worried however, because we now have a permanent guest in our home. I’m wondering if my husband will need to claim him on our census report.

It appears we are housing “Justin-ghost”.

Lest you think this apparition is just a paler (if that’s possible) version of my oldest son, please think again. I have asked Zachary if he is simply referring to his sibling when he regales me with his exploits, and he has assured me in no uncertain terms, that “Justin-ghost” is not Justin. That is a direct quote.

No, Justin-ghost is his own entity. Apparently, Justin-ghost is a scary but relatively benign apparition, not inclined to cause us harm. The other day my son eagerly informed me he had “chased Mommy, Daddy, Justin, and Zachary outside to the car, and we had to make the car go ’vroom’”. I asked if Justin-ghost had come with us in the SUV, and Zach replied in the negative, assuring me the wraithlike creature had instead opted to return home after hounding us into the driveway. I have been informed at bedtime that it should be Justin-ghost who should venture upstairs rather than my youngest offspring, and have been politely instructed that the supernatural being would prefer to carry Zach’s plate and fork to the sink for him. While I don’t believe in well, almost anything, I am a big fan of the supernatural set (my seventh grade science fair project won second place for its informative and intuitive portrayal of the benefits of ESP, hence my interest), and I would pay big money to watch a specter complete chores. I’d happily fit it in between diaper changes.

This is new and completely beguiling territory for me, both the language, crisp and clear in its diction and its message, and the concept that Zach can inhabit a world outside the confines of the literal, the commonplace. I am amazed and enthralled that my son, who a little more than a year ago was reduced to a vocabulary that limited him to half a dozen words that were delineated solely for requests, has not only been able to conjure up an invisible cohort, but can tell me about him, in no uncertain terms. As far as I’m concerned, his friend can take up permanent residence.

And if he does, I sincerely hope he likes me.